Scleroderma - Reset My Life

30/11/2025

28/11/2025

✍️How to Avoid (or Slow) in ?

–associated interstitial lung disease (SSc-ILD) is one of the most serious complications of scleroderma. While it cannot be fully prevented, evidence shows that early detection + early treatment + lifestyle modification can significantly slow or halt progression.

✅ 1. Get Early Screening & Regular Monitoring
Early fibrosis can be silent. Screening should begin at diagnosis.
Recommended tests

High-Resolution CT (HRCT) scan** – best tool to detect early fibrosis
Pulmonary Function Tests (PFTs)** every **3–6 months** (FVC, DLCO)

Why it matters?
Early diagnosis improves outcomes and allows early treatment.
* Denton & Khanna. Lancet. 2017. “Systemic sclerosis.”
* Hoffmann-Vold et al. Ann Rheum Dis. 2019 – Guidelines emphasize HRCT + PFT monitoring.

✅ 2. Start Evidence-Based Medications Early
These improve or slow fibrosis in scleroderma:

(1) Mycophenolate mofetil (MMF)
* First-line therapy for SSc-ILD.
* Effective in stabilizing or improving lung function.

(2) Cyclophosphamide
* Effective for ILD but more side effects.
* For severe or rapidly progressive disease.

(3) Nintedanib (Ofev)
* The only FDA-approved anti-fibrotic for SSc-ILD.
* Slows the rate of lung fibrosis progressio

(4) Tocilizumab
* Helps in early diffuse cutaneous SSc + ILD stabilization.

✅ 3. Control GERD to Protect the Lungs
Micro-aspiration from acid reflux may worsen fibrosis.
Effective methods:
* Proton Pump Inhibitors (PPIs)
* Elevate head of bed
* Avoid late-night eating

✅ 4. Avoid Lung Irritants
* Don't smoke (any form)
* Avoid chemical fumes, dust, silica
* Prevent indoor air pollution

✅ 5. Vaccinations
Respiratory infections accelerate fibrosis.
Recommended:
* Influenza
* Pneumococcal
* COVID-19 booster (if applicable)

✅ 6. Exercise & Pulmonary Rehabilitation
Moderate exercise improves lung capacity and reduces decline.

✅ 7. Anti-inflammatory Diet & Lifestyle
While not a cure, they reduce oxidative stress:
* High-fiber fruits & vegetables
* Omega-3 sources (fish, chia, walnuts)
* Avoid processed foods & high sugar
* Manage stress
* Adequate sleep

📚Reference :
Herrick et al., Best Practice & Research Clinical Rheumatology, 2021 – Lifestyle factors influence SSc outcomes.
Georges et al., Clin Exp Rheumatol, 2020 – Exercise improves function and quality of life in SSc-ILD.
EULAR Recommendations, 2023 – Strongly encourage vaccination in SSc.
American Thoracic Society (ATS) ILD guidelines, 2020
Strand et al., Curr Opin Rheumatol, 2019 – GERD management is essential for SSc-ILD patients.
SENSCIS Trial, Distler et al., NEJM, 2019.
Scleroderma Lung Study I, Tashkin et al., NEJM, 2006.
SSced trial*, Khanna et al., Lancet. 2020.

Photo : Radiology Materclass

28/11/2025

Shout out to my newest followers! Excited to have you onboard! Deb Engler, Marivic Mata, Mischelle Nielson

26/11/2025

What is the most likely diagnosis❓

A. Psoriasis
B. Dermatomyositis
C. SLE
D. Scleroderma

Cr. nervemed

23/11/2025

Scleroderma can leave marks on the skin that tell a story of strength, endurance, and daily battle. For many warriors, the disease becomes visible through skin tightening, discoloration, swelling, or changes in facial features and hands. These outward signs are more than physical differences—they are reminders of what the body is enduring. Visible scleroderma can draw attention, questions, or even judgment, making the emotional weight just as heavy as the physical symptoms.

The visible effects of scleroderma are diverse and deeply personal. Some warriors experience hardened skin that affects movement, while others face noticeable swelling or changes in texture that can limit flexibility and comfort. These physical changes can make simple tasks more difficult, from bending fingers to walking comfortably. Though the signs are seen on the outside, the battle is still happening within—each visible mark representing resilience, adaptation, and courage.

Because visible scleroderma is so noticeable, understanding and empathy become even more important. Warriors may struggle with confidence, self-image, or unwanted attention from people who do not know the condition. By raising awareness, we remind the world that these changes do not define a person—they reveal a fighter who continues to push forward. When we recognize the visible signs with compassion instead of judgment, we help create a community where every warrior feels respected, supported, and seen.

23/11/2025

23/11/2025

We have a Sclero brother undergoing a dual lung and kidney transplant tonight. Please take a moment to send healing energy to our friend Andrew!

We’re all rooting for your success, rejuvenation, strength, and support in this time!!! You are SCLERODERMA STRONG. 💪🏽💪🏽

13/11/2025

☀️Fatigue in ( )

is one of the most common and disabling symptoms in systemic sclerosis (SSc). Studies show that 40–75% of patients experience moderate to severe fatigue, significantly affecting daily functioning, emotional well-being, and overall quality of life.

✅1. Why Fatigue Occurs in Scleroderma

1.1 Chronic Inflammation
Systemic sclerosis is an autoimmune disease that causes persistent inflammation. Pro-inflammatory cytokines such as IL-6 and TNF-α can directly induce feelings of exhaustion.

1.2 Vascular Dysfunction
Raynaud’s phenomenon and microvascular disease reduce blood flow to tissues, causing reduced oxygen supply and muscle fatigue.

1.3 Gastrointestinal Dysfunction & Malabsorption
GI problems are extremely common in SSc.
Poor gut motility
Malabsorption
SIBO (Small Intestinal Bacterial Overgrowth)
These cause nutrient deficiencies and chronic fatigue.

1.4 Lung Involvement
Patients with Interstitial Lung Disease (ILD) or Pulmonary Arterial Hypertension (PAH) have reduced oxygen exchange, leading to:

Shortness of breath
Exercise intolerance
Persistent fatigue

1.5 Chronic Pain
Joint pain, muscle pain, digital ulcers, and stiffness increase energy expenditure and disrupt sleep, worsening fatigue.

1.6 Mental Health Factors
Higher rates of depression and anxiety in SSc patients contribute significantly to perceived fatigue levels.

1.7 Sleep Disturbances
GERD, pain, itching, and breathing difficulties often impair sleep, leading to non-refreshing rest and daytime tiredness.

✅2. How to Manage Fatigue in Scleroderma

2.1 Treat underlying organ complications
Managing lung disease, vascular disease, anemia, and SIBO often improves fatigue.

2.2 Exercise Programs
Low-intensity, regular exercise (walking, stretching, yoga) improves stamina and reduces fatigue.

2.3 Nutrition & Micronutrient Support
Address malabsorption, treat SIBO, and ensure balanced diet with adequate hydration.

2.4 Manage Pain
Effective treatment of joint or muscle pain can reduce fatigue significantly.

2.5 Improve Sleep Hygiene
Treat GERD, establish sleep routines, and reduce nighttime disturbances.

2.6 Mental Health Care
Counseling, mindfulness, and support groups reduce anxiety and depression linked to fatigue.

References (APA 7th Edition)
1. Bassel, M., Hudson, M., Taillefer, S. S., Schieir, O., Baron, M., & Thombs, B. D. (2011). Frequency and impact of symptoms experienced by patients with systemic sclerosis: Results from a Canadian national survey. Rheumatology, 50(4), 762–767.

2. Nihtyanova, S. I., & Denton, C. P. (2016). Pathogenesis and management of fatigue in systemic sclerosis. Rheumatology, 55(Suppl 2), ii42–ii50.

3. Sobanski, V., Giovannelli, J., Allanore, Y., et al. (2019). Association of gastrointestinal involvement and fatigue in systemic sclerosis. Arthritis Care & Research, 71(11), 1480–1487.

4. Milette, K., Hudson, M., Baron, M., & Thombs, B. D. (2013). Sleep disturbances in systemic sclerosis. Arthritis Care & Research, 65(8), 1338–1346.

5. Herrick, A. L., & McLaughlin, V. V. (2015). Pulmonary arterial hypertension in systemic sclerosis: Diagnosis and management. BMJ, 350, h1659.

12/11/2025

Struggling with swallowing problems or acid reflux from systemic sclerosis? Systemic sclerosis, or scleroderma, often leads to swallowing problems, dry mouth...